Children and Young People’s Continuing Care National Framework

1. Introduction

A Continuing Care package funded by the NHS Integrated Care Board (ICB) is required when a child or young person has needs arising from a disability, accident or illness that cannot be met by existing universal or specialist NHS services alone. For example paediatric support or community nursing.  A package of additional health support (whether fully or partially funded by the NHS) may be required for the child or young person. This package of care is called Continuing Care.

All practitioners who work with children or young people with extra needs should be aware of the responsibility of the NHS ICB to provide Continuing Care and the importance of information sharing in this assessment process.

For further information please see Children and young people’s continuing care national framework.

2. The Process

2.1 Assessment

The assessment is led by the health assessor nominated by the ICB.

For children under the age of 16, their parents can consent to this process. However the Mental Capacity Act applies to young people over the age of 16 and a capacity/best interest assessment should be completed if the young person is not able to consent to this process taking place.

For further details please refer to the Mental Capacity Resource.

There are four areas that need to be considered in any assessment. A particular disease or diagnosis is not in itself a determinant of need for Continuing Care.

These are

• The preferences of the child or young person and their family (this should include family, siblings and others involved in providing care and support to the child or young person. Care can be very invasive in the home environment so the family’s views are very important as part of the assessment);
• An holistic assessment of the needs of the child or young person and their family (this should include undertaking a health assessment, collating information from previous assessments, including assessments from education and social care. Consideration should also be given to proposed environment of care and health needs of family members);
• Reports and risk assessments from the multidisciplinary team or evidence collated during the Education, Health and Care Plan assessment. The health assessor is responsible for collating evidence from other professionals which includes risk assessments and reports. Expert advice may also need to be sought from Consultants, Psychologists, Occupational Therapists, Speech Therapists etc;
• The Decision Support Tool for children and young people (this is a summary judgement of a child or young person’s needs drawing from evidence from other parts of the assessment).

The outcome of the assessment is a recommendation from the assessor as to whether or not the child or young person has continuing care needs. The recommendations should be shared with the child/young person and their family.

If there are any safeguarding issues, a decision may be made by the ICB not to share the assessment with the family. This decision would be made in consultation with children’s social care.

2.2 Decision Support Tool

The aim of the Decision Support Tool is to provide a framework on level of need of a child or young person. Eligibility is not dependent upon a single or multiple medical condition but is focused on understanding of the child or young person’s overall complex health needs.

The Decision Support Tool looks at 10 care domains, divided into different levels of need.

The Decision Support Tool provides a way to assess a child’s or young person’s complex health needs across 10 health related domains:

• Challenging behaviour;
• Communication;
• Mobility;
• Nutrition, food and drink;
• Continence and elimination;
• Skin and tissue viability;
• Breathing;
• Drug therapies and medicines;
• Psychological and emotional;
• Seizures.

Each of these domains have varying levels of needs showing either:

• No additional needs;
• Low level of needs;
• Moderate level needs;
• High level of needs;
• Severe level of needs;
• Priority needs.

The need for each care domain should be over and above what would be expected for a child or young person of that age. For example incontinence would not be an issue in relation to a younger child.

For further information on the Decision Support Tool please see Children and young people’s continuing care national framework.

2.3 Decision Making

A multi-agency forum or panel will then consider the evidence and the assessor’s recommendation, to reach a decision as to whether or not the child or young person has a continuing care need. A decision should ideally be made within 6 weeks of commencement of the assessment.

Following the decision the child/young person and their family should be notified in five working days of the decision and given a clear explanation of what has been agreed.

Key professionals working with the child or young person should also be informed of the support being offered.

3. Resolving Disputes

If the child/young person is not successful in securing Continuing Care funding then they should be informed of their right to appeal or how to complain. This information should also be published in the Local Offer of services for children with SEND.

The local authority and ICB should have a local disputes resolution process in place.

4. Package of Care / Arrangement of Provision

A decision will then be made on how continuing care can be provided, what proportion and level of resource is required and what should be specially commissioned. It should be child/young person-led rather than provision-led.

The Decision Support Tool should allow information to be gathered about what is needed, what is working and what the child or young person’s views are.

The establishment of a continuity care need should not be determined by the existing package of care a child or young person receives or who provides or pays for it.

Children with complex needs may need a host of services from other agencies and continuing care should be part of a wider package of care and agreement should be made with the commissioners for other elements of the care package. There may be some overlap and local ICB may have locally defined policies when this arises. Education Health Care Planning process is an important part of this process.

Residential care should only be considered if other interventions have failed and there are concerns about home care on the grounds of care, risk and/or capacity.

Please note In line with the Haringey judgement (see Annex C), there are clear limits to what care should be funded by the local authority, which should not be a substitute for additional NHS care for children. In this case, the High Court determined that the duty under section 17 of the Children Act 1989 did not extend to meeting essential medical needs.

5. Personal Health Budgets

If a child or young person receives Continuing Care, the family of the child or young person is eligible to receive a Personal Health Budget to cover their care package.

The health assessor should then plan with the family of the child or young person how best to use this budget to meet the child or young person’s needs.

For further information around personal budgets and direct payments see The Joint Service for Disabled Children Personal Budgets – Comprising Short Break Grants and Direct Payments Procedure.

6. Review of Packages

The child or young person’s continuing care needs should be reviewed in the first three months after the package has started and then annually unless the child or young person’s needs have changed. The child/young person and the family should be able to request a review. The reviews for Education Health Care Plan (EHCP) and Continuing Care should be completed at the same time if possible.

7. Transitions

Young people approaching their 18th birthday will require a reassessment of their health and social care needs as part of their transition planning, and, wherever possible, these young people should continue to receive their healthcare on an unchanged basis until they have been reassessed.

Every child or young person with a package of continuing care who is approaching adulthood should have a multi-agency plan for transition to NHS Continuing Healthcare pathway as early as 14 with plans being made from when a young person is 16 (a screening process should take place). Eligibility in principle should be determined by the time the young person is 17 years old for NHS Continuing Healthcare (this replaces Continuing Care) when a young person reaches 18.

Entitlement should be established using the National Framework for NHS Continuing Health Care.

See The Regulations and Guidance for NHS Continuing Healthcare.

8. Fast Track Assessments / End of Life Care and Support

Children and young people who require fast-track assessment because of the nature of their needs (such as a palliative care need) should be identified early and the continuing care process should not restrict access to end-of-life care for children and young people who require immediate support over a shorter period, and should not result in any delay to appropriate treatment or care being put in place.